Coping is hard to do (STILL)


(shariza) #1

My daughter who is now 11 yrs old was diagnosed about 17 months ago with T1D. She was 9. And I know we have come a very long way, from being a multiple daily injector, to getting a CGM to now her pump, from stares, glares, tears, highs-lows, all types of emotions it’s endless!!! Through it all, we as a family have grown together, we have allowed ourselves to “feel” because we know this is a “part” of her now- but diabetes is NOT her! Right? But sometimes-sometimes during those moments when I can’t figure out why her body just doesn’t want to cooperate and after a few breaths, and her behavior shows her glucose has defiantly plummeted- the stares and whispers still get to me. Diabetes disrupts everything!!! All she wanted to do was jump rope with her peers. the juice didn’t bring her up quick enough, nor did the second, at that point it was close enough to lunch it was just time eat… its hard when “I”/ “you” know what is right for your child (eat child, please) but then when she starts refuse check her BG around strangers and your briebing your kid to eat anything at this point. It sort of sends a mixed signal to people who have no idea what is really going on. Then behold a emotional breakdown comes… frustration builds to the top when onlookers judge. “Coping” is still hard to do… and I am not always sure if I handle it in a positive way. But is T1D in any way a beautiful thing?


(lrp) #2

An illness is never a beautiful thing. How you grow together and persevere through it, therein lies the beauty.


(Dennis J. Dacey, PWD) #3

I’m really happy to hear that your daughter and you and your family are making progress. You have come a looooooong way and have probably gone through the most difficult part of managing T1 - your words tell me that you have begun to accept that she has a lifelong “friend”.

Those stares and glares of strangers who don’t understand will never be something of the past, but accept then and do what NEEDS to be done; hopefully your daughter will also be able to ignore those who “don’t know” and that she will lead the life she want to have and not let diabetes hold her back.

Tell her that I give her a BIG thumbs up and a “great going”!


(shariza) #4

Thank you for your words, they mean so much to me! I do think we have come along ways- but at times managing gets the best of us. There is no break in between. That is the tough part. some days she can handle the states better than others, but days when all she wants to do is be “normal” it gets her down. I can feel it and it just breaks me down. Even the strongest structures need repair now to remain standing tall. Thank you for listening I feel better already!


(erinmpoche) #5

I think the fact that you are coping is teaching your daughter some great life lessons. I remember one time when his pump stopped working in the middle of the night and I wanted to crawl into a little ball on the kitchen floor and start crying but then I looked up and saw him watching me and I knew that I had to keep it together, because he was going to have to deal with it for the rest of his life. I’ve been dealing with this for over ten years and if I can glean anything good from this disease it’s that it’s brought me and my son closer in so many ways. I’m so amazed with everything he handles on a daily basis. I think all kids who grow up with type 1 diabetes are so extraordinary in their coping skills. Yes, it’s an incredible, awful challenge, but they are stronger for it. I try to tell him everyday how proud I am that is dealing with so much. I say if you can do this, you can do anything!


(moose) #6

Hang in there.My daughter was 8 when she got diagnosed. We went through the same problems you are describing.As they get older they have a better understanding of their body and how it makes them feel when they are high and when they are low. It is a process, I will tell you. I had many bouts of crying and wondering if this would ever get better. Well it did. I don’t know where you live but we live in Los Angeles, California, I have to say there continues to be the stares, and questions like “what is that” or is that a “pager.” My daughter has gotten used to both the remarks and stares. In fact many times she runs into others who where pumps and they start a conversation of “what pump are you on”. Unfortunately, I got through one, my son just recently at the age of 16 was diagnosed. Starting the whole process again. I thought is would be easier, however I have found it to be more difficult because he in his teenage years and being very non-compliment. A lot a anger, resentment,and fear because he saw his sister have a seizure when he was 10 years old, and is deathly afraid of hypoglycemia and would rather be in higher ranges. I know in my heart, and giving you some faith, it will get better.


(bsteingard) #7

I used to hate doing anything diabetes related in public. I didn’t want other restaurant-goers to stare at me; I didn’t want to explain to my classmates why I got to have an extra snack or keep food in my desk; I didn’t want anyone to know that I was sick. It took me a long time to figure out that hiding wasn’t helpful. Continue to support your daughter - make sure she knows you understand why it bothers her - and someday she’ll come around. Resilience is not something people are born with. Resilience is a process through which people respond to adversity and it can be taught. I went to a lecture recently about diabetes burnout and building resilience and I think some of my notes might help.
Characteristics of resilient people:

  1. They tend to have a “growth mindset.” The process matters more than the product.
  2. They practice acceptance. Diabetes sucks; acknowledge that and ride the waves.
  3. They know their boundaries.
  4. They surround themselves with positive people.
  5. They are self aware.
  6. They have a team. Never worry alone.
  7. They consider all angles and explanations. Is there a way to be more flexible?
  8. They know how to set realistic goals.
  9. They develop skills and tools.
    Try to teach your daughter these things and she’ll become a stronger person because of her diabetes. I can tell from your posts that you’re already off to a good start (“I know we have come a very long way, from being a multiple daily injector, to getting a CGM to now her pump” = #1; “we as a family have grown together” = #6; “this is a “part” of her now” = #2).

(BethSteckel) #8

I’m so sorry to hear about your struggles, just know you are not alone. It’s often exhausting for everyone in the family. I hate to use the word lucky, but we are “lucky” in that my husband is also T1D so from when my daughter was diagnosed at 4, she knew she was not alone. We have recently gotten more involved with our local JDRF chapter and she has loved it, being around other T1D kids has been such a blessing.


(addie29) #9

Hang in there mom! That’s a huge responsibility…and also on your daughter too.
I HATE the staring aspect. One time…some girl lingered longer in the bathroom
just to spy on what I was doing with my injections. She made me SO nervous, I
dropped and spilled all my test strips.
I’ve been T1D for about two years now and it doesn’t get better, but it will get
"easier".
We are all here for each other!


(AML127) #10

@shariza hey! I struggled with these issues as a small kid too. I’m now an adult and mother. After 32 years with t1d, I still haven’t learned all the tricks. But here are a few things that helped me and worked for me.
I hated checking blood sugars in front of my peers. It’s just weird. But it’s also not good to just ‘sneak away’ and isolate yourself. Which is what I did-isolate. I had one friend who was willing to check my BGL for me. She somewhat played nurse on me and she thought it was cool to help me. If I needed insulin, of course she did NOT help. But if I needed a snack she then b came my waitress. Haha. It’s helofuk to ask a friend to help and fill them in before it’s necessary to act.
Another option is to let your child check your BGL sometimes as a deal for you to check your child’s BGL.
Another thing that helps me before exercising is to drink a glass of milk. It has the right amount of sugars and protein to slowly release sugar as I exercise. This is also helpful if low BGLs are an issue during the night. A glass of milk before bed will slowly release sugars for quite a duration.

Of course there’s no guarantee this will work for y’all. You have to find what works for y’all. But I did want to share some small things that helped me. Best of luck!!!


(Tracy) #11

As it has been said before, you have come along way. Take pride in that as well as the closeness this tiger has brought your family.

Now, to dig in the to the looks, stares all that stuff. As it has been said as well, they don’t go away unfortunately. It’s been four years and we still get them. But you do in time learn to ignore them and concentrate on what your child needs. The other thing that I have found that has helped our family is educating those that stare or glare. Many times I have walked over to the one doing it and explained what and why it is happening. A mother out with her young child, I have approached and educated both in a way that seemed to help not only the current situation but possibly any that may arise in the future. School functions as well. Some people have not been so happy to be given the knowledge but at least they are made aware of how their actions effect others. But most have been pretty accepting.

What is I think funny about that is my son, from his diagnosis on has been the biggest advocate for himself and the tiger as we call it. He has educated many friends, as well as teachers about the beast. But at home, is the kid who just wants to be normal. He is finally starting to see what we have been telling him all these years, he is normal with just a little extra to give. The giving-the passing of the knowledge of what the beast is and how he has to control it.

But as I finish this up, the biggest thing I can tell you I have learned over the past four years is that no matter what anyone says or does, my child will always come first and if they don’t like it, they can move along.